Sue: A bumpy yellow brick road

I was not surprised that I had breast cancer when I was 41, since my mother was diagnosed at the same age, but went on to live until age 80. But I was surprised that after treatment for DCIS and four years of careful surveillance, a fast growing lump seemingly “came out of nowhere.” I delved head first into the world of breast cancer: research, support groups and advocacy.

I worried daily the first few years, finally settling into the survivor role. I was courageous, diligent, and could breathe a sigh of relief, working with women newly diagnosed, giving them hope that they too could beat breast cancer. I felt like I was in control of my life and my cancer. But eight years later, I was diagnosed metastatic with a lesion in my sternum and an absolute lack of symptoms.

So, my studying, my second and third opinions, my conference attending, my advocacy grant reviewing, my lobbying for more research funding, my role model persona (8 years cancer free sure made women happy!), my closet full of pink was not enough to stop the tumor cells from advancing.

I had expected pain; I was certain I would be confronted with a concrete example of the cancer returning, not this silently encroaching disease. I was looking for that tell-tale lump, the pain escalating, the signs I knew that would have me running to the oncologist. I was expecting that my medical team would be on top of this, and would catch it– early diagnosis, the mantra for initial breast cancer. But that’s not the way metastatic breast cancer works.

After diagnosis, for years I was fine–chemo for six months followed by miraculous little pills and I began to live again, back in control. My husband and I traveled extensively; our family grew to four beautiful grandchildren whom we visited often. I volunteered, read, shopped, walked and explored everything that my early retirement from teaching gave me time to do.

I was not prepared for the other serious conditions and side effects of cancer treatment, which for me included transfusions, prednisone, weekly blood tests and hospitalization for an immuno-compromised body.

In May, to celebrate my big birthday – 65 and thrilled to be alive– we planned a wonderful trip, beginning in Paris, hooking up with a tour through the hills and valleys of France, and ending in our beloved city of Brussels to explore on our own. The old me took over and we planned for every day, all our side trips, and even our health. I was given the absolute ok, and blood tests and experts at one of the best hospitals were part of our pre-trip, and off we went.

But after one glorious day in Paris my legs ached and, advised by our travel insurance, we took a cab to an incredibly wonderful hospital, to have blood drawn and, I thought, begin my prednisone dose and then continue to travel. With no truly serious symptoms, we were shocked to be presented with hemoglobin and platelet numbers that had plummeted since my blood work three days earlier. With firm directions, verified by American physicians, to stay in the hospital ICU, hooked to monitors, and treated aggressively, it was not exactly the vacation celebration we had planned!

More spread to bones and my almost eleven year, record-setting success from one important hormonal drug had ended. I was switched to another and am hoping this too will work well for me. And along this journey, my yellow brick road, more bumps lay ahead I’m sure, but I have realized even when control alludes me, how very important it is to value life, friends, family and faith because no statistic can show what the future holds.